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National Mps Society Inc

EIN 11-2734849 · Durham, NC

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthGood85 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE NATIONAL MPS SOCIETY EXISTS TO CURE, SUPPORT, AND ADVOCATE FOR MUCOPOLYSACCHARIDOSIS (MPS) AND MUCOLIPIDOSIS (ML).

Income
$5.6 million
Spending
$2.7 million
Spent on programs
77%
Reserves
4.1 months of spending
Largest source of income
donations and private grants, 87%
Employees
14
Volunteers
75
Highest pay
$161,083, president &

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 85 out of 100.

  • Reserves

    20 of 35

    Spendable reserves would cover 4.1 months of spending.

  • Debt

    20 of 20

    It owes 3% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 51% of income.

  • Income trend

    15 of 15

    Income rose 163% on the year before.

  • Spending floor

    15 of 15

    77% of spending went to programs and raising each dollar of donations cost 5 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100.

  • Independent board

    25 of 25

    12 of 12 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $612,165 spent. THE SOCIETY FUNDED APPROXIMATELY 7 RESEARCH GRANTS DURING 2025 FOR THE PURPOSE OF FINDING TREATMENTS AND CURES FOR MPS AND RELATED DISEASES. THE CHIEF SCIENTIFIC OFFICER (CSO) LEADS THE SOCIETYS STRATEGIC DIRECTION IN RESEARCH, NEWBORN SCREENING, AND EMERGING SCIENCE INITIATIVES. THIS ROLE OVERSEES THE DEVELOPMENT AND FUNDING OF RESEARCH PROGRAMS TO ADDRESS UNMET MEDICAL NEEDS IN MPS AND ML DISORDERS, GUIDES ADVOCACY FOR NEWBORN SCREENING EXPANSION, AND EVALUATES INNOVATIVE SCIENTIFIC ADVANCEMENTS. THE CSO COLLABORATES WITH ACADEMIC, CLINICAL, AND INDUSTRY PARTNERS TO DRIVE PROGRESS IN TREATMENT AND DIAGNOSIS, AND ENSURES ALIGNMENT WITH THE ORGANIZATIONS MISSION TO SUPPORT FAMILIES AND ACCELERATE CURES.
  2. $482,034 spent. THE NATIONAL MPS SOCIETY PROVIDES COMPREHENSIVE SUPPORT TO FAMILIES AFFECTED BY MPS AND ML THROUGH ITS FAMILY SUPPORT AND PATHWAYS PROGRAMS. AT THE TIME OF DIAGNOSIS AND BEYOND, LICENSED SOCIAL WORKERS ENGAGE FAMILIES THROUGH IN-HOME VISITS AND ONGOING GUIDANCE, HELPING THEM NAVIGATE THE COMPLEX CHALLENGES OF LIVING WITH A RARE DISEASE. THE SOCIETY ALSO OFFERS CRITICAL FINANCIAL ASSISTANCE, INCLUDING FUNDING FOR MEDICAL EQUIPMENT, EDUCATIONAL AND BEREAVEMENT SCHOLARSHIPS, EXTENDED HOSPITAL STAYS, MEDICAL TRAVEL, AND CONFERENCE PARTICIPATION. THESE SERVICES ENSURE FAMILIES RECEIVE COMPASSIONATE, PRACTICAL SUPPORT. IN THE CROSSING PATHS PROGRAM EXPANDS EQUITABLE ACCESS TO EDUCATION, CLINICAL STUDIES, AND CRITICAL RESOURCES FOR FAMILIES AFFECTED BY MPS AND ML IN UNDERSERVED INNER-CITY AND RURAL COMMUNITIES. THROUGH OUTREACH, PARTNERSHIPS, AND TAILORED SUPPORT, THE PROGRAM BRIDGES GEOGRAPHIC AND SOCIOECONOMIC BARRIERS, ENSURING FAMILIES HAVE THE KNOWLEDGE AND OPPORTUNITIES TO PARTICIPATE IN CLINICAL RESEARCH AND RECEIVE SPECIALIZED CARE. THE NATIONAL MPS SOCIETY PROVIDES COMPREHENSIVE SUPPORT TO FAMILIES AFFECTED BY MPS AND ML THROUGH ITS FAMILY SUPPORT AND PATHWAYS PROGRAMS. AT THE TIME OF DIAGNOSIS AND BEYOND, LICENSED SOCIAL WORKERS ENGAGE FAMILIES THROUGH IN-HOME VISITS AND ONGOING GUIDANCE, HELPING THEM NAVIGATE THE COMPLEX CHALLENGES OF LIVING WITH A RARE DISEASE. THE SOCIETY ALSO OFFERS CRITICAL FINANCIAL ASSISTANCE, INCLUDING FUNDING FOR MEDICAL EQUIPMENT, EDUCATIONAL AND BEREAVEMENT SCHOLARSHIPS, EXTENDED HOSPITAL STAYS, MEDICAL TRAVEL, AND CONFERENCE PARTICIPATION. THESE SERVICES ENSURE FAMILIES RECEIVE COMPASSIONATE, PRACTICAL SUPPORT. IN THE CROSSING PATHS PROGRAM EXPANDS EQUITABLE ACCESS TO EDUCATION, CLINICAL STUDIES, AND CRITICAL RESOURCES FOR FAMILIES AFFECTED BY MPS AND ML IN UNDERSERVED INNER-CITY AND RURAL COMMUNITIES. THROUGH OUTREACH, PARTNERSHIPS, AND TAILORED SUPPORT, THE PROGRAM BRIDGES GEOGRAPHIC AND SOCIOECONOMIC BARRIERS, ENSURING FAMILIES HAVE THE KNOWLEDGE AND OPPORTUNITIES TO PARTICIPATE IN CLINICAL RESEARCH AND RECEIVE SPECIALIZED CARE.
  3. $1.0 million spent. THE SOCIETY PROVIDED INFORMATION SERVICES AND EDUCATIONAL SUPPORT FOR AFFECTED FAMILIES (NEWSLETTERS, SYNDROME BOOKLETS, FACT SHEETS, WEBSITE, DIRECTORY) AND INCREASED PUBLIC AWARENESS OF THESE RARE GENETIC DISEASES (CONFERENCES & ADVOCACY).

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated September 30, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated September 10, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since July 1986.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 7, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.